Special education has taken many turns and made many changes and strides over time. One thing that has unfortunately grown only slightly is the stigma behind having a difference or different ability. As a society, I believe, we are still stuck in a place that is unacceptable and unfortunate. We are living in a world where it is still “wrong” to be different and we are still judging and treating people inequitably. There is nothing wrong with a diagnosis, there is nothing wrong with a disability. Changing this societal stigma is a must and it starts with talking about it.
I will be honest with you, identifying my children’s diagnoses gave me pause. I grew up in the 80s and 90s where the stigma was even stronger and the differences completely misunderstood. I didn’t want to see my kids struggle. I didn’t want anything to be “wrong” or harder for them. I didn’t want there to be more they had to traverse than the regular difficult world. However, after a brief pause, I realized more importantly, I wanted to know how to support their growth, learning and their lives. I wanted to know how to best parent them and raise happy, self-sufficient kids. Getting a diagnosis became another job for me. With one kid it was fairly straight forward, Adhd…it was clear basically from birth that we were headed that way. With the other, it was a journey. A five year journey to be exact. It would involve many more doctors, visits, questions, tears, tests, scales, conversations, therapies, thoughts… diagnoses being offered up and then taken off the table. It was a roller coaster of emotions. Diagnoses that seemed reasonable and others that were scary. Throughout the journey I had many different worries, thoughts, and experiences that ultimately led to relief that there was an answer. That answer led us to a plan of action and a path. It turned out that through that journey I learned a lot about acceptance and letting go of expectations. I grew a lot in my outlook and I hope to share that with my community. The fear that comes with all of these types of journeys stems from the societal stigma. Remove the stigma and all we have are people with unique differences that make up our world.
In an article from Additude magazine, Merriam Sarcia Saunders says it beautifully, “A diagnosis for my children with ADHD meant they were entitled to learning specialists who made a difference at school. It meant I understood what drove their difficult behaviors and reminded me to dig for compassion for their struggles in moments when I wanted to scream. It meant I could become Mamma Bear, standing up for my misunderstood children. And it meant I could excuse myself from feeling that I was a failure at parenting. A diagnosis is information. And information is power.” Without information we hold onto fear of the unknown. How will school go? Will my child be able to…? What will other kids say? How will my parents react? Will strangers judge me? At the end of it all, what is the best you can do for yourself or your child? Denial or avoidance won’t get you anywhere, a diagnosis gives you the power to make change and be part of the difference. If you are a parent with a child who may need an evaluation and you are hesitating, just remember, if you hide or deny who your child is, you are only feeding the stigma and creating an idea that something is “wrong” with them. Nothing is “wrong” with them.